Posts

Glastonbury fun

I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.

I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.

Sam and Timm Cleasby at Glastonbury festival

We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.

Glastonbury flags

Glastonbury

If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.

she wee at festivals ileostomy bags

For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!

Glastonbury with a teenager

I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!

Camping with an ileostomy, festivals with a stoma chronic illness and festivals

It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.

Your festival, your way

The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.

The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.

Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.

It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.

relaxing at a festival chronic illness

The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.

Here’s to Glastonbury 2020!

Sam xx

My Glastonbury hero – there are still good people in the world

Let me tell you a story about how people are wonderful. A modern Glastonbury tale of social media and kindness.

In April this year, I had my 8th surgery in 5 years. We had Glastonbury tickets and I thought there was no chance of making it, I didn’t think I would be well enough to go.

But I did make it!! Thanks to the accessibility team for sorting me toilet and access route passes and my husband for tons of patience and support. If you are attending a festival, do check on their website for access information and get in touch with their team to discuss your needs. You can find Glastonbury’s Access information here. Also check out Attitude is Everything. Attitude is Everything improves Deaf and disabled people’s access to live music.

Anyway, I got there to the hottest glasto in a long time and my stoma started playing up. The stoma bags were peeling off and I went through 16 in 4 days. I think it was a mix of the heat, sweating, my still lumpy and uneven tummy and unfamiliar food.

Stoma problems

Usually I change my ileostomy bag every 2 or 3 days, so to be safe I packed 18 bags so I’d have loads spare. But by Saturday at Glastonbury I only had 2 bags left and my bag keeps leaking. I enter panic mode, how on earth have I gone through so many? Why didn’t I pack even more? Was I going to have to go home

We went to the medical tent but they didn’t have any ostomy bags. They suggested calling my supplier or going offsite to the nearest hospital and asking them. I called my supplier but they were closed till Monday. The thought of getting offsite and out to a hospital and then getting back seemed too much to bear.

So I decided to tweet my plight with the hashtag #glastomadrama and got 100s of retweets! Maybe just maybe, there will be someone here who has a few bags to spare? I’m panicking, this could be festival over. To get so far to get here then have to leave?! Gutted!

Then I got a phone call from BBC Sheffield – a woman has seen my tweet and called her dad. When he couldn’t get in touch with me, hed seen I present on the BBC and called them to give me his number!

My hero

He was at Glasto and has some spare ostomy bags! I can’t believe it, a knight in stoma bag armour!! We navigate a meet up, which anyone who has been to Glastonbury knows can take a long time and be a nightmare. We exchange text messages saying “I’m wearing a shirt with tigers on it and I’m outside the Caberet tent” and “I’m an old man wearing a flowery hat”!! Eventually we find eachother and he’s happy to give me the bags. But there’s a problem, the bags are in his campsite the other end of Glasto, maybe an hour or so walk. I feel a bit sick, I just don’t think I can manage the walk there and back.

So we went to the Welfare Site and asked for help! They called the A Team who came to our rescue and drove us both to his campervan to redeem the ostomy bags and saving my festival!!!!

Glastonbury A team welfare team disabled accessibility

Andrew spent a good few hours of his Glasto to help out a perfect stranger. He could have ignored the tweet, he could have realised I couldn’t manage the walk &not want to wait for the a team to drive us, he could have turned his head and pretended not to notice. He didn’t.

If not you, then who?

This is Andrew. He redeemed my faith in humans and saved my festival. He said to me ‘if you’re able to help someone, then help them, if not you, then who. If not now, then when?’

Glastodad glastonbury with an ostomy bag

Thank you Andrew, you’re a true gent!

Sam xx

HUGE news!

I have been desperate to share this news for a few months but had to wait for everything to be confirmed, but I have some HUGE news!

In February 2018 I will be traveling to Munich, Germany and co-hosting an amazing event to raise awareness and money for Crohns and Colitis UK and Lupus Foundation with none other than Hollywood actor Ian Harding from Pretty Little Liars!!

You can find more information and buy tickets here.

ian harding lupus sam cleasby crohns and colitis uk

Just in case you can’t read German, here is a translation from the website:

“Autoimmune diseases Lupus and Crohn’s disease Crohn’s are a treacherous affair: often doesn’t show the suffering people go through, and yet a diagnosis has serious consequences for life.

To raise public awareness of the incurable disease, actor Ian Harding – coming known from the hit series of Pretty Little Liars and multiple winner of the teen choice awards – and the renowned British Blogger Sam Cleasby host an exclusive benefit concert in Munich.

Together with Cleasby, Harding leads through the program of the evening. Afterwards, you can meet Harding and Cleasby personally, when they will be signing event-designed T-Shirts, posters and flyers to  all concertgoers.

The proceeds of the event go to the organisations Lupus Foundation of America and Crohn’s and Colitis UK, whose Ambassadors are Harding and Cleasby.

The Bands Splashing Hill, Liann and a third act which is yet to be announced provide the musical accompaniment. Supports the event is through the European Crohn’s and Colitis Foundation ECCS, by the Director of the Crohn’s and Colitis Centre in Munich, Prof. Dr. med. Thomas Ochsenkühn. This serves the medical backgrounds of the events, which will also be addressed in the context of a discussion panel with Cleasby and Harding.

Regular updates to the event can be found on the Facebook page of splashing Hill.”

ian harding lupus sam cleasby crohns and colitis uk

I am over the moon and so proud to be part of this awesome event and can’t wait to team up with Ian and give a great show! It would be amazing to see some of my european readers over there, it’s going to be a blast!

I have done talks around the world, but this will be my first time speaking in Germany and so I am really excited to get to hang out and get to know some badasses from around Europe.  I am always so proud to be asked to speak and this will be my first time hosting an event, so I just hope I do you all proud.

I hope to see you there!

Sam

European Crohn and Colitis Organisation and Boehringer Ingelheim

I was very pleased to be asked to talk at the 12th congress of the European Crohns and Colitis Organisation in Barcelona.  I will be attending next weekend and speaking with a panel of people from around the world about what life would be like if everyone in the world had IBD.

 

ECCO barcelona IBD speakers

 

The Boehringer Ingelheim group asked me to be part of their innovative talk hoping to encourage a new way of thinking for medical professionals and pharmaceutical companies.  They hope a discussion where the patient is put first will make people consider what it would be like if IBD wasn’t an illness but the norm.

What would treatment look like? How would buildings be designed? What would work, social and personal life be like for the world? With this thinking, perhaps patients with IBD will be more at the forefront of medical professionals minds when they are treating us.

sam cleasby public speaker disability

I love public speaking, it gives me the opportunity to use my experiences to educate others and to offer support to members of the public.  This event is a little different as it is aimed at medical professionals, I hope by taking part that I can help to shape the way doctors, surgeons, nurses and health professionals look at their future IBD patients.  And for that I feel very grateful, honoured and proud.

 

Sam xx

The #GetYourBellyOut birthday ball 

I was super excited to be invited by Crohns and Colitis UK to attend the #GetYourBellyOut 2nd birthday ball with them.  As it was Timm’s birthday, he came along too!

#GetYourBellyOut is a great group who raise money for CCUK and awareness of life with Inflammatory Bowel Disease.  To join in the campaign, all you have to do is upload a picture of your belly to your chosen social media accounts using the hashtag #GetYourBellyOut! You DO NOT have to have IBD to join in the campaign, just a willingness to help raise awareness!

You can also make a donation by sending the text IBDA99 and your donation amount E.g. ‘IBDA99 £3’ to 70070 (UK mobiles only) or you can donate to the JustGiving page online here. ALL donations go to Crohn’s and Colitis UK.

The event was held at the National Motorcycle museum in Solihull and it was an absolute blast! It was amazing to be in a room filled with so many inspirational and wonderful people, stories were shared and the drinks flowed as people talked about their own IBD journeys and the difference that the campaign has made to their life.

IBD is known as an embarrassing illness and it can be hard for people to speak out about their illnesses and how it affects their lives.  So to be at this event where everyone is speaking openly (I was going to say ‘poo was on everyone’s lips’ but that sounds very, very wrong!) was just brilliant.

#GetYourBellyOut is doing amazing work and I was so chuffed to be invited, here are some of the photos from the night.  I’d highly recommend you head over and check out their work.  Someone asked me if I felt in competition with the group and with other IBD bloggers, and I can wholeheartedly say NO!  I think we are all on the same team and we all do what we do to try and make the lives of other people better.  I happily promote and share the work of other bloggers because I want to get everyone talking about their health, it is all about raising awareness and the more voices out there, the better.

When I was diagnosed with Ulcerative Colitis in 2003, there was so little support, the internet and social media have brought together so many people who are willing to speak out and to offer help to others and that is just so special.  I started this blog in early 2013 when I couldn’t find much info and support in the UK, nowadays there are so many more blogs, websites and support groups and this can only be a good thing.

Let’s celebrate all those who work hard in tough circumstances to shout out, to stop poo being taboo, to raise awareness, raise money and work to find a cure.  The Get Your Belly Out birthday ball was certainly a celebration of all those things.


Thank you guys for all your fantastic work!

I suppose it is only right that I get my belly out for this event, so here you go!

 

Sam xx

Why you should go to support groups

I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

public speaker about self esteem ulcerative colitis crohns ostomies colostomy ileostomy jpouch ibd

 

It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx

Pelican Live Your Life Roadshow – Preston

I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.

At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.

IMG_3807.PNG

Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:

Email – ku.oc1568931862.erac1568931862htlae1568931862hnaci1568931862lep@g1568931862nitek1568931862ram1568931862
Freephone – 0800 318 282

The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.

Sam x

Crohn's and Colitis South Yorkshire Dinner Dance

I am involved in the Crohns and Colitis UK South Yorkshire group and in October this year, we are holding a super exciting dinner dance (ticket info available soon) at Oakwell Stadium in Barnsley.  There will be live music, a DJ, guest speakers, footballers and a raffle (plus extra things to be announced closer to the time).

If any of my amazing followers can help with either free stuff, raffle prizes or donation of time, that would be AMAZING!!

crohns and colitis uk south yorkshire

 

Crohn’s and Colitis UK​ are a charity close to my heart and we want to raise a lot of money for research and support but also allow people to make connections with others in South Yorkshire and to raise awareness of Crohns and Colitis.

The volunteer group is entirely run by people with IBD or their family members and so as you can imagine, it is difficult when we are all dealing with our own health issues, but we do it to make a difference, so PLEASE get involved.

If anyone can help or donate a prize, then please get in touch.

You can find out more about Crohns and Colitis South Yorkshire on the site here, like them on Facebook, or follow them on twitter.

 

Sam x

 

Speaking

I did a talk at the Crohns and Colitis UK South Yorkshire Autumn lecture, I joined Mr Brown, consultant and surgeon at Sheffield Hallamshire and Northern General hospitals and we gave a patient/surgeon take on Ulcerative Colitis, surgery and treatment.  I had a brilliant time, the talk was filmed and I will share that with you when I get hold of the final cut.

I received this from Sandra Capewell, Chair of the South Yorkshire Crohns and Colitis group and was blown away.  I work hard to make a difference to the lives of people with IBD and to hear that I am helping just means so much.

 

“I discovered Sam Cleasby in an accidental kinda way and boy am I glad I did!  She’s an extraordinary woman… mother, homemaker, photographer, writer, public speaker, blogger… is there no end to Sam’s talents?  I first started reading Sam’s blog earlier this year and was blown away by her honest, open writing style (it does become addictive!).  She shares everything with her reader – all the ups and downs of her health along with stories of her loving family and views on self esteem – her words take you on a roller coaster ride in your own armchair.  You start to believe you know everything about her!  Sam has such a positive outlook on life – there’s glass half empty people and glass half full people but Sam is in a different league altogether… she’s the glass overflowing person.
Sometimes when you discover something good you want to keep it for yourself but I would have been doing a disservice to many if I had not shared Sam with others…  I asked Sam to give the lecture at the South Yorkshire Crohn’s and Colitis UK (CCUK) Autumn 2014 meeting and she was more than happy to oblige.  The old girl didn’t let me down.  The lecture covered her operations, positive body image and, as always, the continued support of her husband.  Her energy is boundless and her positivity is infectious – it gave people hope, even those experiencing different problems.  Just by being in a room Sam makes people feel happier.  And it wasn’t just me who was impressed with her lecture – here are a few comments from CCUK members:
“Very inspirational”
“The lady advocate for acceptance, self reliance and not giving up was the best speaker on positive behaviour and attitudes I’ve ever heard in my experience of 20+ years of IBD.”
“Interesting and informative”
@so_bad_ass you were brilliant!  You made me and another girl get teary (in a good positive way).  Poo shouldn’t be taboo!  Thank you.”
Read her blog.  Arrange for her to speak to your group.  Follow her story.  You won’t be disappointed!”
– Sandra Capewell (Chair – South Yorkshire Crohn’s and Colitis UK)
If you would like me to speak at your event, get in touch now
Sam x